Whether I Live or Die

For a long time, I was so sick that I was unable to advocate for myself. I didn’t have the ability to think coherently, and I didn’t have the energy to fight for care (not “good” healthcare, not “better” healthcare, just healthcare Period).

[Fortunately, I seem to be responding to recent medications, which is giving me more of an ability to advocate for myself.]

When I became absolutely desperate, I scraped myself up and went to my Tricare PCM to fight for care. I didn’t get half of what I needed, but I got a little.  Very little.  (He also tried to kill me by prescribing the wrong meds, against my protests.)

Do you have any idea how dispiriting it is to spend all of your energy on one desperate fight for survival, and fail?

I went back to lying on the couch in front of the television in a dark room.

What really made a life-altering difference was when I finally started receiving care from the VA. (Yes, my experience has been mixed, and yes, many veterans are still receiving inadequate care from the VA.) However, my VA PCM, though horrendously overworked, listened to me, believed me, and started getting me the care I needed.

If not for my VA PCM, I would have lost the use of my left wrist permanently.  I know this to be true because my orthopedic surgeon informed me that this was the case.  After 27 months of neglect by Tricare, my wrist was almost beyond repair by the time I finally saw a surgeon.

In addition to a badly damaged left arm, I also have a chronic, debilitating disorder.  After 15+ years, I still have only a partial diagnosis.  However, I have been unable to get the help I need from Tricare.

I went a little over a week ago to try to see a Tricare Patient Advocate.  I got as far as the receptionist.  He asked me what I wanted.  I told him that I had complex health problems and needed someone to help me manage my case.

I told him I wanted to know that *someone* in Tricare actually cared whether I lived or died.

The receptionist told me that if I filled out a bunch of forms AND WENT AND FOUND MY OWN PROVIDER THAT UNDERSTOOD MY DISORDER AND WAS WILLING TO OVERSEE MY HEALTHCARE, I could apply for a waiver for an off-base provider.

Why this response was completely unhelpful:

  1. There are literally only a handful of doctors in the US who understand the disorder my symptoms seem to suggest.  None of them are in the city where I live.
  2. There are very, very few doctors who are willing to take on a patient with a chronic, complex health condition.  They don’t get paid to deal with complicated patients.  The system is not designed to reward those behaviors.  (In fact, I was told that I would not be accepted as a patient at my nearest MTF because I was too complicated of a patient, and they only take the healthy ones.)
  3. I didn’t come to you to get permission to keep doing all the work of overseeing my healthcare by myself.  I CAME TO YOU FOR HELP WITH MANAGING MY HEALTH.

BOTTOM LINE:  I went to Tricare Patient Advocacy for help, and was told to help myself.  I said, “My case is complicated.  I need help managing it.”  And I was told, “Go find a civilian to help you manage it.”  I asked Tricare for help when I was at the end of my rope, and their representative sent me away to fill out a bunch of forms that would only be useful once I had found my own provider.

Action Items: I sent an email requesting a case manager.  If this is unsuccessful, I will file a complaint/grievance with Tricare.  (On a good day, when my brain is working and I have enough energy.)

Reflection: How many people are in the Tricare or VA systems that are too ill or disabled to fight for the care they desperately need?  Who fights for the warriors (and their families) that can no longer fight for themselves?  Do anyone actively care whether they live or die?

Update: Case Manager assigned within 24 hours of email being sent.

 

Survival Minimalism: What Falls Away

Minimalism.  It’s a trend/movement that’s been picking up steam for at least a decade.

People are attracted to minimalism for many reasons.

Some accidentally – they travel with just a backpack, and decide life is better with less baggage.  But some become minimalists out of sheer survival – because their health is so poor they just can’t continue to live life the way they used to.

A smaller house/apartment, fewer things to maintain – choosing to downsize can make life easier to handle logistically and financially.  It can also make life easier to handle psychologically.  But, in many ways, shedding possessions is the easier course of action.

Shedding commitments is much more difficult.

Duty.  Responsibility. Taking Care of Others.  Social Responsibility.  Civic Duty.  Family.  Friends.  Job.  Church.  Volunteerism.

We are so busy, in our current culture.  We pride ourselves on how busy we are.  We compete with others over how busy we are, as if that is a symbol of our worth.  We are human doings, not human beings.

Until.

Until we get the news, or the diagnosis.  Until something happens that alters our priorities and shifts our perspective.

Until we remember that the privilege of being is the most important thing.

For a very long time, I tried to keep doing all the things.  I got sicker and sicker because I tried to power through it.  I “couldn’t afford” to be sick.  I needed to fulfill my responsibilities at work – one hundred percent or more.  I  had to fulfill my commitments to my family, and friends, and to the organizations for which I volunteered, and to the kids I mentored, and, and, and…

And then I woke up one day and couldn’t do ANY of the things.

I couldn’t keep the plates spinning anymore.  And they slowly started crashing to the ground…

I fought it for a long time, even after that.  “I can’t keep them all spinning, but I should be able to keep these three spinning.”  CRASH!  “Surely I can keep these two spinning.”  CRASH!!  “Come on! I can keep at least ONE spinning, right?”  CRASH!!!

And then I wallowed, frustrated and unwilling to believe that I could do NONE of the things.

But facts do not change simply because we do not like them.

And the fact is that I am currently dealing with either severe allergies or an auto-immune disease (or both?).

And suddenly life is becoming much more simple, due to survival minimalism.

I used to find it very difficult to get rid of papers and books.  Although I have been trying for years to downsize and become more minimalist, books and papers were the challenge for me.

I love books.  I love physical books.  I have resisted getting an e-reader because I like to hold books in my hands, and write notes in the margins, and highlight important parts of them, and even mark reference sections with book darts.  Book darts.

I once lived out of a backpack for a year – worldly possessions in storage, traveling the world.  Know what I missed?  My books.

But now… I am allergic to book mold.  And possibly to dust as well.

And, suddenly, old books and old papers cause an allergic reaction that makes me ill – for days.

So now I am parting with books, and reducing the papers (currently in binders, and in filing cabinets, and in stacks).

I will most likely purchase a high-quality scanner, to save some of the information on those papers, and an e-reader, to replace some of those books.  And, although parting with the books makes me sad, it also feels like freedom.  I don’t dither anymore over whether to keep a book or a document.

It has become very simple: It all must go, because it makes me ill.

The same thing is happening with my diet (post pending).  I have passed through the mourning period for all the foods I can no longer have (pizza commercials were torture!).  Now I can watch food commercials on TV with disinterest.  Easy to do, when you know eating it will make you sick for days…

Likewise for social obligations.  Initially, I felt guilty for all the obligations I could no longer fulfill.  But the current reality is that I can’t leave my house without getting ill.  The outside world is BRIGHT, LOUD, and full of FRAGRANCE.  Not to mention ALLERGENS.  So, if it’s not critical to my health (doctors’ appointments), I’m not leaving the house.  Sorry, not sorry.  You’re welcome to come visit me, if you’re not wearing FRAGRANCE (that includes scented laundry detergents and fabric softeners).

It’s getting all Oregon Trail up in here.

Remember playing Oregon Trail, and starting out with all the items you thought were essential, but jettisoning more and more of those items as the trip went on?  Survival Minimalism.

“But that’s a Family Heirloom!” “The Indians are gaining on us – toss it overboard!”  “But that has sentimental value!”  “The oxen are too weak from thirst – leave it by the side of the trail.”  Survival Minimalism.

Priority Shift.  New Perspective.  Life suddenly becomes very simple.

Do.  Or Do Not.  It has become a no-brainer.

I’m letting go of the things that make me sick.

I don’t “should” on myself anymore.  I do what I can for others, and I let the rest go.

The world rushes on past, in its busyness, and I am here, in my quiet eddy, learning how to be.  Striving to be…healthy.

It’s a crucible, and all the non-essential things are being burned away.

Survival Minimalism.  It’s not for everyone, but it might be for you.

2017 New Year’s Resolutions

In the spirit of mindfulness (or contrarianism), I don’t do New Year’s Resolutions “just because.”  Because it’s tradition; because it’s expected; because everyone else is doing it.

Many years I don’t make any New Year’s Resolutions.

 One year my resolution was the direct opposite of what most people do – a resolution to start a particular vice.

Although I was inclined not to make any resolutions for 2017, after reflection I have decided I have two:

  1. To get back to the practice of daily yoga and meditation; and
  2. To eliminate BS from my life.

I started 2016 with daily yoga and meditation, and definitely benefitted from it, but the wrist surgery ended that habit.  However, wrist rehabilitation has progressed to a point that I can resume (restorative) yoga, and the elbow seems like it will heal quickly, so I’m going to commit to a daily practice of  healing yoga – but not putting any more weight on that arm than my occupational therapist allows.

Daily yoga and meditation relaxes me, improves my flexibility, and makes me more mindful.  The breathing exercises give me a tool that enables me to release stress throughout the day as I encounter stressful situations.  And I hope that as I regain function in my left arm, I will eventually be able to use yoga to build strength as well.

Regarding the second resolution, well, that’s the result of several years’ worth of experience and reflection.

I have been reading minimalism blogs for about the last five years.  Simplicity blogs.  Tiny house blogs.  Minimalist travelers’ blogs.  I aspire to live a life that has less drag – less “stuff” weighing me down.  Less to clean.  Less to maintain. Less to haul around.  Less to insure.  Less to organize.

After retirement, Spousal Unit & I moved to a home that was 40% of the size of our last home in the military.  We sold stuff, and donated stuff, and packed and moved stuff, and cursed the burden of our stuff.  Despite that, we still have a lot of stuff.

I have read practically every technique or suggestion for how to get rid of stuff.  Except Marie Kondo’s book, The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.  This book was sweeping the minimalism/simplicity blogs a while back.  I read all about other bloggers’ experiences of applying her book to their lives.  The basic premise, as I understand it, is to collect all of one type of your belongings (clothes, books, etc.), see how many you have, and then pick up each item individually and ask yourself whether that item “sparks joy”.  If not, you should eliminate it.

No offense to Ms. Kondo, but her approach just didn’t resonate with me.  I was looking for an approach that just made intuitive sense to me, an approach that was simple but got at the psychology behind my behaviors.  For many people, Marie Kondo’s techniques – “the Konmari method” – does that.  But it didn’t do it for me.

And then one day I read an article about getting rid of B.S.  Shazam!  That was my lightning bolt.

If ever there were a simplification technique that would resonate with veterans, this was it.  Just ask yourself:

“Is this B.S.?”

If the answer is “Yes,” eliminate it.

I don’t care if it sparks joy, but I am all about eliminating B.S.

In fact, the longer I thought about it, the more I appreciated the simplicity and directness of this approach.

Engineers appreciate the elegance of a solution.  An elegant solution is simple but sufficient.  It solves the problem efficiently.  The often-cited maxim of elegant design, from aircraft designer and author Antoine de Saint-Exupery, states: “A designer knows he has achieved perfection not when there is nothing left to add, but when there is nothing left to take away.”

A truly elegant solution also has broad utility.  Eliminating B.S. can apply to getting rid of possessions.  But it applies even more so to emotional baggage, perceived social obligations, and peripheral tasks that eat away at your time (a.k.a. “queep“).

The Pareto Principle, also known as the 80/20 Rule, observes that “the majority of results come from a minority of inputs,” or put another way,  80% of the results/output/profits comes from 20% of the work/employees/customers/etc.  Thus, management experts enjoin us to focus our efforts on the inputs that get results, and spend less resources on the inputs that have diminishing marginal benefit.

In other words, eliminate the B.S.

So my second New Year’s Resolution for 2017 is to eliminate B.S. from my life.  I anticipate that as I do so, I will write about it here, in a series of posts.  I hope you will join me.

Health Hack: How to Eat (Mostly) Healthy for Thanksgiving

I will confess that I am a foodie.  I love trying new foods (and beverages), especially when I am traveling.  But it doesn’t have to be a gourmet restaurant – I’m more of the food truck, street stall, Mom & Pop restaurant, diner type of foodie.  (I’m certainly not opposed to a gourmet dining experience – I’m just too frugal to do it often.)

But, as you can imagine, my recent allergen-elimination diet has had quite an effect on my foodie ways.  

Lately I’ve just been eating to live, getting little enjoyment from the same few bland foods.

However, I was determined to have a delicious Thanksgiving meal.  It was too depressing to think of forgoing the holiday treats.

On the other hand, I didn’t want to be sicker than a dog afterward either.

So, balancing taste and health concerns, here’s the Thanksgiving menu Spousal Unit & I created:

Cornish Game Hens

  • We weren’t having a crowd for dinner, and these are easier to cook than a turkey.  No seasonings – just basted with olive oil and butter and cooked in a rotisserie.
  • We select game hens that are NOT packaged in a flavor solution, as many meats are.  These flavor solutions often contain MSG, a known migraine trigger.
  • allergens: butter (milk/dairy)

Paleo Thanksgiving Stuffing

  • We delete the onion (hard to digest if you have gallbladder issues), mushrooms (prohibited if you have a mold allergy), and pecans (because I don’t like them).  We also substituted apple cider vinegar for the white wine vinegar (more flavor, lower in histamines).
  • Rather than using pork sausage, which often contains MSG, nitrates and/or nitrites (all known migraine triggers), we buy ground pork that is not packaged in a flavor solution, and add spices ourselves.  Melissa Joulwan’s book, Well-Fed, has great recipes for DIY spice and seasoning mixes.
  • We use uncured bacon (cured foods are prohibited if you have a mold allergy) with no nitrites or nitrates (which can trigger migraines).
  • We also buy chicken broth that contains no MSG (a known migraine trigger).
  • allergens: eggs; apples; celery

Paleo Sweet Potato Casserole

  • We delete the pecans/walnuts, because I don’t like them.
  • This dish satisfies the sweet potato craving, but is less sweet than traditional sweet potato casseroles.
  • allergens: eggs; apples; cinnamon/nutmeg/allspice

Maple Bacon Braised Brussels Sprouts

  • Spousal Unit hates Brussels sprouts, but will eat them prepared like this.  If you really REALLY hate Brussels sprouts, you could make Coconut-Almond Green Beans instead (if you can tolerate the spices).
  • We use uncured bacon (cured foods are prohibited if you have a mold allergy) with no nitrites or nitrates (which can trigger migraines).
  • allergens: butter (milk/dairy)

Cranberry-Orange Bread

  • We modify the recipe from a Betty Crocker cookbook.  Instead of using all-purpose flour (which contains gluten), we substitute 1/2 almond flour and 1/2 coconut flour.  This makes the bread slightly more dense (and crumbly), and gives it a slight coconut flavor.  We also substitute orange extract for the grated orange peel, because it’s easier.
  • allergens: gluten-free; butter (milk/dairy); eggs; orange juice (citrus); almonds (nuts)

[Dessert] Pumpkin Harvest Crunch

  • This year we modified the recipe we traditionally use, substituting 1/2 almond flour and 1/2 coconut flour for the yellow cake mix.  This reduced the amount of sugar and eliminated chemical additives in this dish.
  • Instead of canned Pumpkin Pie Mix, we buy canned pumpkin and add pumpkin pie spices ourselves.  This eliminates chemical additives.
  • This year, instead of homemade whipped cream (milk/dairy), we made Whipped Cream from Coconut Milk (recipe from James L. Gibb’s book, Is Food Making You Sick? The Strictly Low Histamine Diet).  We used coconut sugar to sweeten the whipped cream, and substituted vanilla extract for caramel essence.
  • allergens: gluten-free; eggs; almonds (nuts); cinnamon/nutmeg/allspice

[Alcohol]

You may or may not be able to drink alcohol.  Alcohol is not recommended on my allergen-elimination diet – particularly fermented beverages such as wine or beer.  However, I really wanted one drink with Thanksgiving dinner.  So I selected Cranberry Margaritas, since tequila is distilled, not fermented.

  • We used agave nectar to sweeten the margaritas.
  • Be sure to select a cranberry juice that is either 100% cranberry juice, or just cranberry concentrate and distilled water – no added sugar, no other ingredients.
  • I had one margarita.  It may have affected my sleep patterns, but it did not cause my allergies to flare.

NOTE: We did not have mashed potatoes or mashed potato substitutes this year, to reduce the dairy load (and because we already had plenty of food).  If you really want to satisfy that craving, try Mashed Cauliflower.  It might sound weird, but it really does satisfy the mashed potato craving.

NOTE: We are not a gravy family.  If you want gravy, try this recipe from nom nom paleo.  We haven’t tried it ourselves, but it sounds easy and tasty. Allergens: gluten-free; butter (milk/dairy); heavy cream (milk/dairy).  See previous information on onions and chicken broth.

BOTTOM LINE: You *can* have a healthy and tasty holiday meal.  Just pay attention to the ingredients and select recipes that your body will tolerate.

DISCLAIMER: I am not a health professional.  All content is for educational or informational purposes only.  Do not eat food to which you are allergic or which will otherwise negatively affect your health.

 

Not Mission Capable: Why I Have No Post This Week

I wish I could tell you there is no post this week because I have been hiking in the Rockies and enjoying the flare of golden aspens before winter comes.  Or because I have been scuba diving in the South Pacific.  Or because I have been traveling the world sampling exotic cuisines and learning about diverse cultures.

However, the reality is I am just sick and tired this week and feel too crappy to write a post.

The reality is that I don’t have the energy to leave the house, and I’m currently on a very restrictive diet that my allergist has assigned to help us determine my food allergies.

A friend, and fellow vet, sent me this video clip illustrating how crappy 2016 has been and it got me thinking…

So far, this year, I have seen the following medical specialists:

  • several PCMs
  • an orthopedic surgeon
  • several anesthesiologists & a CNA
  • an occupational therapist
  • a physical therapist
  • a neurologist
  • an allergist
  • a dermatologist
  • several radiologists
  • an optometrist
  • the NP who administers Botox shots
  • a PA in the VA wrist clinic
  • and various medical assistants (LPNs etc.)

I have had numerous diagnostic medical procedures:

  • an EMG/CNS
  • 2 MRI/arthrograms (elbow & wrist)
  • 1 cerebral MRI
  • numerous x-rays (elbow & wrist)
  • a cardiac ultrasound (echocardiogram)
  • 2 allergy skin tests (skin prick and injection)
  • numerous blood draws
  • a 24-hour urine collection analysis

And I have had the following treatments:

Once again, I am tired to the bone.  It has been a long year, filled with poor health and weekly medical appointments, new medications with complicated regimens, numerous corrections of Tricare billing errors, and several rejected requests for therapeutic medical devices.  This is also the year I discovered that I have multiple allergies (I didn’t know I had any),  and these allergies require that I make significant diet and lifestyle changes.

On the bright side, I *do* finally feel that I am getting better quality of care.  I am slowly building a team of competent medical specialists to diagnose and treat my health issues.  I am learning how to get rid of the incompetent ones.  Spousal Unit and I are learning how to navigate the treacherous Tricare healthcare system more effectively.  I am getting diagnoses that explain my symptoms, and I am getting treatment to reduce my symptoms and hopefully address the underlying causes.

I tell myself to frame the situation positively.  Instead of telling myself I am broken, I tell myself I am healing.  Both are true.  But I choose to focus on a positive future, rather than a negative one.  I believe this will help me get better.

2016 has been a crappy year, full of debilitating health problems.

But I am healing.

Tired to the Bone

Tired Dog

I try to be optimistic and proactive about my health.  But some days I’m just tired to the bone.

Last week I had three medical procedures.  One was a new treatment, and two were diagnostic.  It may take days, weeks, or months before we know if the new treatment is having an effect.  So I wait…

Meanwhile,

The diagnostic procedures revealed that I have been correct for the past 2+ years that there is something wrong with my wrist.

More than two years ago I fell violently on a wet ceramic tile floor.  Ever since, I have been telling doctors and therapists that I have pain and malfunction in four areas: my scapula, my shoulder, my elbow, and my wrist.

Although my doctor ordered x-rays immediately after the fall, once those came back negative for broken bones she refused to send me for additional imaging (MRI/arthrogram).  Nearly one year later, after I had “failed to progress” in physical therapy, my doctor finally sent me for a shoulder MRI/arthrogram, which revealed that my labrum was severely torn and would not heal without surgery.

By that point, nearly one full year after the injury, I was in severe pain and could barely do my job.  Some days I left work early due to the pain, and I wasn’t getting much sleep either.  I could sleep in one position on the couch, surrounded by pillows that held my shoulder in the least-painful position, but if I shifted in my sleep the pain would wake me up.

I was taking a strong NSAID and a narcotic, but that wasn’t enough to control the pain.  I was getting pretty desperate for relief.  For months I requested that my doctor refer me for pain management, but she refused.

Fortunately, once I received the diagnosis of the torn labrum (a.k.a. SLAP tear/SLAP lesion) things happened a little more quickly.

The story of how I selected my orthopedic shoulder surgeon is a saga for another post.  But once I had authorization to receive care from him, I was able to see him a few days later (one month after the MRI).

At this point, I was desperate for relief, and I didn’t care if it cost me my job.  I told the nurse I would take the first available surgery slot, and asked her to look for cancellations.  She found a cancellation for the following week, which gave me just enough time to stop taking all medications, vitamins, and supplements and get them out of my system so they didn’t interfere with the surgery or the recovery.

I told my boss that I was having surgery the next week, and would probably be out for at least 6 weeks since I couldn’t drive with my arm in a sling.  Although I was an hourly worker, and would not get paid while I wasn’t working, they didn’t fire me.  They told me to get the help I needed and come back when I was better.

I had the surgery, and it was successful.  The surgeon discovered that my labrum was completely severed, and he had to trim it, re-attach it, and anchor it to the bone.  However, the biceps tendon was not torn, and the rotator cuff was not damaged either.

Even immediately post-surgery, the pain level was so much lower than before the surgery.  I was able to stop taking narcotics after about two days.

I started physical therapy seven weeks after surgery.  My surgeon wanted to give the labrum plenty of time to reattach to the bone and form a strong connection.

We noticed in physical therapy that I was still having pain and malfunction in the scapula, elbow, and wrist.  My doctor and physical therapist wanted to give it some time, to see whether this would shake out as physical therapy re-trained the muscles to function as they had before the fall.

My surgeon said that if the pain and swelling in my hand and wrist had not gone down in three months, I should probably see an orthopedic wrist surgeon, as I might have a tear in my triangular fibrocartilage complex (TFCC).

Then a whole lot of life happened.  Moved twice.  Different states. New PCM.  New PCM refused to refer me for MRI/arthrogram of wrist, which was still discolored, swollen, weak, and painful, but did refer me to a new physical therapist.  Physical therapist wanted to try treatment first, but after I “failed to progress” with elbow and wrist function, PT agreed it was time to get diagnostics and see an orthopedic specialist.

Meanwhile, I had finally gotten my VA disability claim processed, and after a seven month wait for an appointment had finally seen a VA PCM.  Since I had not been able to get my Tricare PCM to follow-up on the wrist, I asked my VA PCM to treat it.  She sent me for x-rays immediately following our appointment.  The x-rays showed my ulna was mis-aligned.

Less than two weeks after I saw my VA PCM for the first time, I had EMG and CNS procedures to determine if there was permanent nerve damage in my left arm/hand, and to determine whether the problem was due to a pinched nerve in my neck.

A few days later, I had an appointment at the VA hand clinic.  The x-rays had indicated a problem in my wrist, and the examination at the hand clinic confirmed it, so the hand clinic referred me for a wrist MRI/arthrogram.  FINALLY!

Three weeks later I had the MRI and arthrogram (post pending).  It was more than two years since I had been injured, and more than a year since the shoulder surgery.

The arthrogram revealed not only that I have a TFCC tear, but also that I have a scapholunate (S-L) teartwo torn ligaments in my wrist.

Initially, I was happy to finally have diagnostic evidence to support the injury claims I have been making for the last two-plus years.  And I was excited by the possibility that I could get the ligaments repaired and finally begin to heal.

But today I am just tired to the bone.  I have to find a new orthopedic surgeon in the state where I now live.  Someone I can trust to work on my wrist – a very delicate and complex part of the human body.  Someone in either the Tricare or the VA system.  And I have to get authorization 1) to consult with them and 2) to have surgery, if necessary.

Plus, I still don’t know whether I have a torn ligament or ligaments in my elbow.  My physical therapist thinks that I do.  But I haven’t been able to get Tricare or the VA to send me for diagnostics of my elbow yet.

On a better day, I will conduct more research on orthopedic wrist surgeons, and I will fight to get the referrals and the treatment that I need.  On a better day, I will take positive action to resolve this injury.

But today I am tired.  Today I will rest and regroup, so that I can resume battle recharged and equipped with knowledge.

Bottom Line:  It’s ok to be tired.  We all need rest.  We all need self-care.  Resting does not mean we are weak.

Lessons Learned:

  1. Keep fighting until you get the care you need.  There will be good days and there will be bad days, but you deserve to be heard and to be treated.
  2. You don’t have to go it alone.  Get a Patient Advocate, Case Manager, or lawyer to assist you.
  3. “If you haven’t got your health, you haven’t got anything.”  I delayed my first round of physical therapy because I was busy with work and school.  If I had “failed” PT sooner, I probably would have gotten my shoulder MRI sooner and my shoulder surgery sooner.  I wish I had made my health more of a priority sooner.  Problems don’t go away when you ignore them.
  4. Learn the administrative procedures.  HMOs typically have set procedures for dealing with illness, injury, etc.  PCMs have to follow the sequence when treating patients.  Even though I knew I needed shoulder surgery, I had to “fail” PT first.  It will do you no good to try to pre-empt procedures – you won’t get authorization to do things out of sequence.  So find out the sequence and get it done so you can get to the end-state you need.
  5. Trust your gut.  Various healthcare providers gave me various ideas on what might be causing my symptoms – only one of them was (partially) correct.  I knew from the beginning that something was wrong with my wrist and that I needed imaging to find out what it was.  You know your body better than anyone else.  If you know something is wrong, keep demanding treatment until it’s fixed to your satisfaction.
  6. Watch out for wet freaking ceramic tile floors!  Or any other slip, trip, or fall hazard – you don’t want to jack yourself up like I did.

Dealing with a Health Condition or Disability that Others Can’t See

Unseen disabilitiesSome disabilities are visible, and others are not. They each have their own challenges. I can’t personally speak about what it’s like to have a disability that is obvious to others. If someone who has experience with that would like to write a guest post for this blog about their experiences, please contact me.

My disability is chronic and debilitating, but it is not visible. When it is flaring up, people sometimes notice symptoms. But most of the time, it is not obvious. While that means I don’t always have to deal with other people’s biases or awkwardness, it also means that other people typically don’t understand or respect my limitations.

It can be difficult for others to accept or remember your restrictions when “you don’t look sick” – especially if they have never personally experienced a chronic illness or disability. They may become offended when you cancel plans you had made with them, or don’t keep in touch as often as you used to. Or, because they don’t understand your limitations, they may try to convince you to do things you know would be detrimental to your health.  They may even imply that you are lazy or “faking.”

Before my condition became debilitating, I didn’t understand when someone with a chronic health condition told me that sometimes it was just too exhausting to go to church because so many well-meaning people would come up and ask how they were doing. I didn’t understand when I read on a blog that a person with a chronic health condition had gotten divorced because they just didn’t have the energy to cope with their health *and* try to sustain a relationship. Now I understand.

If you have an unseen illness or disability, and you have people in your life that you would like to have a better understanding of your reality, I highly recommend this post by Christine Miserandino.  (You can also download it from that website as a pdf.) It’s called The Spoon Theory, and it’s the best explanation I’ve seen of what it’s like to live with a chronic, debilitating condition.  Even if they still don’t really get what it’s like to be you after reading the article, at least it will give you a common vocabulary to explain things to them.  I find it very helpful to be able to say, “I don’t have enough spoons for that,” or “If I do this with you, it will take all of my spoons, or nearly all of my spoons, and then I won’t be able to do x, y, or z.  Is that how you would like me to spend my spoons today/ this week?”  It helps make my reality a little more tangible for others.

P.S. – If you’re wondering what the people at church “should” have said to the person with the health condition – if you’re wondering what the “right” thing is to say to someone you know is coping with an illness or disability – I recommend “It’s nice/good to see you.”  It acknowledges that you noticed I haven’t been around, and you noticed I am here today, but it doesn’t require me to spend my limited energy talking about my health.  If I’m feeling well enough to be here today, I probably don’t want to be reminded that I frequently *don’t* feel well enough to attend, and I don’t want to feel defensive about my limitations.  Just say “hi” – it’s enough.